Our little girl is growing up so fast! Emily will be 8 months old next week!
In our last update, Dawn mentioned that we were taking Emily off the Phenobarbital (seizure medication) and putting her on Keppra. We now have a new baby girl. They told us that the Phenobarbital numbs her brain, but we had no idea how much since she has been on it her whole life. It took three weeks to wean her off it completely, but in the first week there was a significant difference in her demeanor. She became more alert and began to smile a lot more. We didn’t notice the changes immediately, but the therapists mentioned it and we recognized it then. We are pleased to say that she is much more aware of her surroundings and is a joy to be around most of the time; although she still has her moments.
We are continuing to meet with the Speech Therapist and the Physical Therapist three times a month. I have been feeding her bottled food for some time now and I have mastered getting her to eat…when she wants to eat! There are days when it doesn’t matter what you do, she will not swallow. You can put as much food in her mouth as will fit, but it will all come right back out. I have come to the conclusion that she is obsessed with apples. They are the only thing that she will eat. I will start out with pears or squash and she will spit is back out, then I will go to apples and she eats it all. I was told to mix the apples with other things and then she will eat it but that is assuming she is ignorant and can't tell the difference. I have a genius for a child and she knows the difference! It doesn’t work. So I stocked up on apple sauce and will continue to try everything and see what will work.
Our goal is to get her to eat more food and give her less in the tube. Another goal is to increase the amount of food she eats during the day so that we can eliminate her night-time feeding. I have consulted some mothers to see what a normal child would eat and Emily is way behind. We have slowly increased her feedings to 4 ounces three times a day. When I increase a feeding just a little bit, she has dry heaves and reacts badly. I have been experimenting on her for the last few weeks to try to figure out what works with her and how to increase the food, but nothing has been successful yet. We have come to a stand still. Even today, she reacted badly with the 4 ounces. So for now, it is status quo until she can handle a little bit more. It has been a long slow process and I think it is going to be a lot longer before we can eliminate the night-time feeding.
I had the physical therapist make me a list of exercises that I should be doing with Emily on a daily basis and I have been doing what I can throughout the day. If I were to do them all, we wouldn’t get anything else done. We are doing stretching exercises for most of her muscles and trying to get her head and arms strengthened. She can only hold her head up for a short period of time. The funny thing is that she can hold her head up longer when she is on her tummy than she can if she is sitting up. I guess all the “tummy time” has paid off. Because she is unable to hold her head up for any length of time, she is unable to sit up on her own without the help of her special chair.
I don’t remember if we have ever mentioned the special chair, but as part of the First Steps program, we are entitled to some great benefits. We were able to borrow a special chair as well as a wide variety of exercise equipment that our physical therapist likes to bring. We were even able to get two chairs so we can leave one at church and not have to lug it back and forth. We have an exercise ball, a vibrating pillow (which Emily loves), and many other items that I use during her exercise time.
Dawn mentioned in our last email that we are seeing an orthopedic doctor in June to get Emily on a medication that will help relax her muscles. I have this appointment next Monday. This medication will help her relax so that her arms are not always stretched out and her feet are not always flexed. As I mentioned in some of my previous emails, she has trouble controlling her hands because it is hard for her to bend her elbows. When she is totally relaxed, she can put her hand in her mouth, but if she gets startled or she bites her hand too hard, her arms straighten out and she can't bring her hand back until she relaxes again.
We have some good news! We have decided to get into the 21st century! I have started a blog and it is my hope to update it every week. I am new to this blogging thing and I hope to get it looking better as time goes by. If you are unfamiliar with blogs, which some of you probably are, click on this link and it will take you there, then right click on your mouse and add it to your favorites. If you do this, you won't have to remember what the web address is.
If you know Dawn and me, you know that for the past five years we have been willing to go wherever God leads us. When we were being called to Kentucky, we knew this was just the first place He would bring us. We don’t know where we will be going next (most likely NOT RI), but wherever it is, we are ready, willing and able to go. We (I mostly) thought by this time, we would be overseas serving as missionaries in some city that we had never heard of before and where they are in need of the gospel. God had other plans and we are still here in KY seeking where He will have us go next. All this is to explain why we have named the blog “Wherever He Leads We’ll Go.”
In order to get everybody on the same page, I have also put together another blog that has all our emails going back to when Emily was first born (this blog). A word of warning if you are planning on visiting this site…it is long!
I am sure there are things that I have missed, but the benefit of having the blog is that I can update it every day if I want to and you are not getting bombarded with emails from me. It is now your responsibility to keep up on the latest Emily news and pics.
Please leave comments on the blog and/or send us emails to let us know what is going on in your lives!
All for HIS glory,